Who's on Kadcyla/TDM1?
I've found some older threads about Kadcyla/TDM1, but it's hard to tell who's still on the drug and how they're doing. Can we start a new thread for those of us who are currently on it?
I'll be starting Kadcyla Monday after failing PH. PHT worked great until I dropped the Taxotere; then, I had progression when I was just on Perjeta and Herceptin. It's scary because this is the first time I've had to move on to a new drug. I was dx with liver mets last May and have been on PHT the entire time since then.
I'm interested in how long you've been on Kadcyla and how is your quality of life? What side effects are you having? I've read as much as I could find, and the main se's seem to be nausea, dry mouth, low platelets, and neuropathy. Does everyone get all of these se's. Are there other common se's?
I appreciate any information that can help me know what to expect. I wish all the best to everyone.
Hugs, Trish
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No responses? Am I the only person on Kadcyla at this time? I'd love to hear about the experiences of others who are on this drug. I'm a little nervous to start a new treatment after so long and would appreciate some encouraging comments.
Thanks, Trish
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Hi Trish03
I have been on TDM-1 since January of 2013 and I have found that it has been very manageable! I had bone mets only when I started it and I have been NED since the third treatment (scans coming up again next week) I feel fine the day I have treatment (I get it every 3 weeks) and there are no pre meds. I am tired for about the next two-three days with nausea on and off but zofran takes care of the nausea and the tiredness is usually helped by going to bed a little early... I rarely have to take a nap and it really doesn't affect my schedule. I have a 4 and 6 year old and I am fine to run after them. I have never had a problem with low platelets or neuropathy. Dry mouth is a pain but start on Biotene right away, it makes a big difference. I hope you do well on it! Let me know if you have any other questions!0 -
I have been on TDM-1 almost a year now. I feel pretty normal most of the time. About 2 days after reach infusion I feel run down and a little nauseated. Kinda like I'm getting the flu. The first several rounds it was more severe than it is now. I get tired for a could of days and don't have much of an appetite. I have a little neuropathy in my feet, but that is probably from prior chemo therapies. I seem to have more hot flashes now, even though my ovaries were removed 3 years ago.
TDM-1 has worked pretty well for me. I did get a brain met this past summer and did gamma knife and continued with the same drug. Mets in my bones and liver remain stable. They aren't disappearing, but they aren't growing and I have a good quality of life.
I don't notice in particular having a dryer mouth, have had no platelet problems at all. I do have low potassium and sodium now, but not sure that is from the drug.
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Brooklyn & petjunkie, thank you very much for your responses. We must be a really small group, but I'm happy to have found the two of you who are on Kadcyla.
Brooklyn, I'm thrilled to hear that you've been on the drug for a year and that the se's are manageable. It seems that fatigue and a little nausea are fairly common for about 3 days after treatment; I think I can deal with that. It's wonderful that you got to NED on this drug. That really gives me reason for hope. I read about one lady who had to stop the treatment because of bad neuropathy in her feet and legs, so I'm glad to hear that hasn't been a problem for you. If you're able to run after a four and a six year old, then you must be doing really well. You don't know how great that makes me feel!! I hope you upcoming scans are good for you and that you continue the have success on Kadcyla.
petjunkie, it's great news that you've also been on the drug for almost a year now and that you feel normal most of the time. That's really encouraging information for a Kadcyla newby like me. Do you take anything for the hot flashes? I started taking Zoloft several years ago, and it works very well, even for the 9 years I was on Arimidex. I'm sorry to hear that you got a brain met but very happy that the gamma knife got rid of it. I'm glad that the mets in your bone and liver remain stable. My only mets are in my liver, and I hope Kadcyla zaps them. I already take potassium because mine is low due to the terrible diarrhea I've had on Perjeta. I'm looking forward to getting rid if that problem. I wonder how long it will take for the Perjeta side effects to get out of my system.
Thanks again for the information. Maybe there are some more Kadcyla/TDM1 ladies out there who will chime in with their own experiences. It's always comforting to talk to others in the same situation.
Hugs, Trish
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Hello Trish, I have been on TDM1 since the summer of 13'. I was diagnosed Oct 2012 with mets to the liver and spine. I'm given bendryl and tylenol before the treatment which make me tired. Besides that I find it to be manageable. The few sides effects I have are a little neuropathy in my fingertips, a runny nose -oddly I read somewhere that was also a side effect, and dry mouth after the first few days after the treatment. Since being on TDM all scans have came back stable.. My doc has stated I will continue the TDM1 as long as it continues to work for me. I wish you well with the TDM1.
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Bump.
Hoping to find some more ladies on Kadcyla(tdm1) who are willing to share their experiences.
From what I've read so far, it seems to be a very doable drug. I'm excited about starting it Monday.
Thanks, Trish
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I just started this 3 weeks ago and landed in the hospital from dehydration after the 1st infusion. I was having a lot of nausea after the 1st infusion and was using phennigran for it. Somehow I dehydrated so bad I was hallucinating, I posted a thread about the whole ordeal. Anyway, other than the nausea I do fairly well. When I go in this time I plan to ask for fluids along with the kadcyla and see if that helps me with my hydration while dealing with the nausea. I have a friend on my chemo cycle that always go in for hydration the Tuesday after tx (we get our tx on Fridays) and I may start doing that with her to help me. Otherwise the tx is very easy and doable for me.
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I had my first treatment of Kadycla on Monday (today is Saturday). So far the se's haven't been bad at all. I haven't had any nausea or dry mouth. The main thing I've noticed is that I feel tired a lot. It's definitely not as bad as the fatigue I had with Taxotere, thank goodness. I also have pain in my lower back if I'm on my feet very long. I'll be curious to see if these se's last the entire cycle. The best change is that I don't have the diarrhea I had while on Perjeta. Woo Hoo!!!!
LuAnn, I'm sorry to hear about your dehydration and having to go to the hospital. I hope that was a one-time event for you. I'm trying to drink lots of water so I don't have that problem. Since I haven't had any nausea, maybe it won't be an issue. I hope you can get some relief from the nausea. It's strange how some people get certain se's and some don't.
Chicago girl, I've also had a runny nose...didn't make the connection, but it makes sense. it's awesome that you've had stable scans while on Kadycla! I hope you are able to remain on it for a very long time.
I have to go Tuesday for bloodwork to see if my platelets are OK. I really hope everything's fine because I'd hate to have to start going every week for bloodwork as I did on Taxotere. If my count are OK, then I won't have to go every week. So far I really like this drug compared to PHT. I just hope and pray that it'll control the cancer so I can stay on it for a long time.
Hugs, Trish
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So glad your first treatment went well Trish!!! Hope your side effects remain mild! I also have a constant runny nose... People are constantly asking if I have a cold (it's annoying!) My scans came back with nothing new and nothing bigger so all is well and I get to continue on TDM
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I had my first tx 2-6 it was a larger infusion ( not sure if thats normal) it took 3x as long as the next ones will be.
My SE are tricky cuz i had a pluera effusion before starting and was drained once before. But twice since starting. I have bad edema in my feet and shortness of breath. Tired, but I have 3 school aged kids so thats a constant regardless lol
Nightly i run a fever. I think cuz i overdo it during the day.
I see my dr weekly to monitor me. So thursday hopefully he has good news.
Trish- Since we are nearly starting at the same time it will be nice to compare notes!
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Brooklyn, congratulations on the good scans. It's always good to hear there's nothing new and nothing bigger. I hope you continue to do well on Kadcyla.
Texasrose, I don't think my 1st infusion was larger, but it did last longer because they had to give the infusion more slowly and watch me for reactions. I haven't had any fever or nausea as many have; my main se's are feeling really tired and lower back pain when I stand up very long. It's been a week today since my treatment, and I think the tiredness is finally getting better. Sure hope so!
I'm really hoping this drug works. I have bloodwork tomorrow, so I'll find out if it knocks my platelets down. If it does, I'm not sure what they'll do about it.
I wish all the best for everyone. I hope we can all have a long ride on this treatment because it does seem to be easier than most.
Hugs, Trish
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Hi Trish03!,
I haven't been on here in a while but decided to take a peek and of course once I saw this I had to reply. I have liver, bone and skin mets and started kadcyla in sept-oct of this past year and I've been managing pretty well. I get scans tomorrow but previous scans before this one showed stable.. It's not much but I hope it helps.. I hope it works for a long time! Like you, I tried the p/h/t combo and two months after the taxotere was dropped, I had progression, which was a blessing in disguise because I had diarrhea the WHOLE time
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Hi, debsing,
It's so good to hear from you. It's wonderful that you've gotten 6 months on Kadcyla and that you're doing well. I think stable is definitely something to celebrate! It sounds as though your experience with PHT was the same as mine. I did great on the 3 drugs...significant shrinkage each scan. Then after dropping Taxotere, the progression started. Even though it was small, my onc thought it would be better to change to the Kadcyla. I agree; it was a blessing in disguise. The diarrhea with P was terrible; it pretty much controlled my life. Even though I've been off the P for two weeks, I've had a couple of episodes. I hope it just means that the P isn't totally out of my body yet.
I hope that your scans tomorrow give you a good report. Please let me know how it goes. I'm really hoping this drugs works because I don't know what would come next. My onc said something about going back on Taxotere or trying Kadcyla. He decided on the Kadycle, so I don't know if that means Taxotere is next.
I see you're ER+, too. Are you taking anything for the ER+ component? It concerns me some that I'm not, since my tumor was greater than 95%+ for estrogen.
Hugs, Trish
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i am 95% estrogen positive too, and I'm not taking anything for it, which I've wondered about from time to time
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I will be joining you ladies! Just saw my onc and will start Kadcyla next Friday.
I am a 12 year survivor of Stage 4 with original liver mets. Now have a recurrence in the lymph nodes behind my sternum.
Tried Aromasin, Faslodex, and Gemzar, and have been on Herceptin for 11 years.
New plan will be Kadcyla and Faslodex. My nurse said that they SE's are very minor, and I will look forward to the end of hair thinning from the Gemzar.
Denise
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scan results came back stable!
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Debsing, congratulations on the stable scans! The Kadcyla must be working well for you. Woo Hoo!!!! I know you must be very relieved.
Denise, welcome to the Kadcyla group. I'm amazed that you've been Stage IV for 12 years. That's truly remarkable!. Do you still have any liver mets or just the lymph nodes behind the sternum. I was dx with liver mets at the end of May, so you are truly an inspiration! I don't have any experience with Faslodex, but Kadcyla seems to be easy so far.
All the best to you. Trish
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Hi Trish.
Somehow, my signature history got erased, so I will have to update it. I was an immediate Stage 4, but the liver met wasn't verified until a year after I was first dx'd.
In Jan 2004, that met grew into 9cm! with numerous liver mets throughout.
I went on Gemzar with Herceptin and in 9 months I was in remission. Stayed in remission for 6 years, until these lymph nodes started up.
My liver has remained clear.
Denise
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had my second dose today. I had lost 20 lbs in a week so my dr was concerned. Honestly i have NO appetite at all. They ended up adjusting the dose.
Oh my edema is better my dr saw that my protien was low and apparently that can cause water retention.
Welcome Denise- i agree 12 yrs is insperational. You start next friday or tomorrow?
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texasrose-I start tomorrow.
Oh I would LOVE to lose 20 pounds!!!! I do need to! But that is way too much in one week!
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Denise, I'm really happy to hear that your liver mets have remained stable for so long. That's amazing. I hope you do well on Kadcyla. I will have my 2nd treatment on Monday. I don't know yet whether it's getting rid of the tumors, but I do know that my liver enzymes are lower. I've had no side effects except feeling tired and lower back pain, but it's nothing like the fatigue I had on Taxotere.
Texasrose, I can't imagine losing 20 pounds in a week. Do the docs know why you don't have an appetite? Have you tried drinking Boost or something like that? At least, you'd be getting some nutrition. I'm glad your edema is better. I hope your doctors figure out how to relieve your other side effects. You don't have time for that if you're running after three children.
Hugs, Trish
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So far so good. Was done with chemo by 5, but was supposed to stay another 90 minutes (!!) to make sure that I didn't have a reaction.
Nurses let me leave after an hour though.
They only had one patient who had a bad reaction on it.
I had a Decadron pre-med.
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Doing okay. Tummy is a bit urpy, but not bad. Had a cup of tea with honey and I felt terrible.
Have barely been able to tolerate tea since I started on Faslodex. Definitely a no-no now.
My nurses told me that Kadcyla should not affect my blood counts very much so I am really hoping to get some energy back that Gemzar took away.
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Denise what 90 minutes! I only have to sit 30 minutes... that seems excessive. Glad no major SEs. Sucking on hard candy helps my tummy.
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That was because it was my first tx. To be on the safe side I guess.
Got to watch the cleaning crew work....
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Had my 2nd treatment of Kadcyla yesterday. The infusion took 30 minutes; then I had to stay for another 30 min. so they could watch me. I also had Benedryl first, so that took a little time. It's definitely different from the many hours with THP.
I'm a little concerned because today I got the results of my liver panel that was done yesterday. It showed that some of my liver enzymes are elevated compared to 3 weeks ago. AST was 35 (up 13); ALT was 34 (up 10); Alkaline Phos was 123 (up 2). Bilirubin was the same 0.3. Although only 2 of them are above the normal range, I'm very worried about the trend. I'm afraid that this means that Kadcyla is not working as it should. My onc doesn't do tm's, so this is the only indicator I have between scans. My next scans will be two weeks after my next treatment, a total of 5 weeks. That's a long time to worry.
I really want this drug to work because the se's seem very mild so far. I feel tired, and my back hurts sometimes, but that's all.
Has anyone else had elevated liver enzymes when the drug was actually working? I guess I'm looking for something positive so I don't automatically assume the worst.
Hugs, Trish
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My liver is in remission. I will see my onc in April, so I will ask about my liver then.
Will also ask my nurse when I got back in 3 weeks for my second tx.
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I will see my onc in 3 weeks when I have my next treatment, but when I ask him, he will just say that he'll know more when we do the scans. I'm sure that's true, but I often learn more from reading about ladies' actual experiences on this board.
Denise, thank you for your response. That is such a powerful sentence to read that your liver is in remission! It's very encouraging to know that's even a possibility.
Trish
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Trish,
To be more specific, in Jan 2004, I had a 9cm liver met and numerous (too numerous to count) 3 cm mets throughout.
They were tripling in size every three months and were very aggressive. After 9 months of Herceptin with Gemzar, my liver was clear!
My onc and I are amazed that it has remained clear, but I will take it....
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This is the first day that I didn't have nausea.
Other SE's = bloody nose, itchy watery eyes, leg pains. But all tolerable.
Good news is that my hair has finally quit falling out because of the Gemzar thinning!!
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